Sam. Conqueror. Overcomer.

On the 15th May 2009, Samuel Christian made his way into this world...two month's premature and in severe respiratory distress. Within hours, Sam was diagnosed with Rubinstein-Taybi Syndrome - a very rare congenital disorder, of which little was known. The diagnosis together with the immediate challenges Sam faced to thrive became our core focus and it was with joy and thankfulness that we eventually brought Sam home, after nine weeks in the NICU.

As time pressed on, it became obvious that Sam's development was falling behind that of his RTS peers. Shortly before his 5th birthday Sam underwent a brain scan and it was confirmed by a paediatric neurologist that in addition to Rubinstein-Taybi Syndrome, Sam also has Cerebral Palsy related to his premature birth, as well as Autism.

This blog chronicles our journey through these challenges...
Our world has crashed, been blown apart.
This can't be happening....why us? Why now?
Your fragile life shaken before it could barely start,
How do we get through this...please, Lord, tell us how?

Drowning in our sorrow, waiting for answers that just don't come.
Our baby "special needs"? It simply can't be true!
The heartache overwhelms us, we're left feeling cold and numb.
The diagnosis tells us little - these children are so few.

But then we finallyget to touch you, to see your precious face
And all the heartache and questions fade, replaced with love and pride.
It's obvious from the very start you're showered in God's grace,
And with His love and guidance, we'll take this challenge in stride.

When once we couldn't pronounce it, Rubinstein-Taybi's become our norm.
When once the future seemed dark, we now welcome the journey as having an RTS angel brings lessons in unexpected form.

Our world has crashed, been blown apart!
This IS us.....right now!
We've been blessed with a gift, so precious from the very start. How do we get through this? Here's how.....
By believing in a God, so merciful and great,
By trusting that He's right beside us as we journey through the narrow gate.
By believing His love for us is not determined by a human frame,
By trusting that we draw Him near by merely calling His name. This precious baby we asked God for,
Prayed he'd be perfect and complete.
And, as Samuel means "God hears", He's laid His answer at our feet.

(Nicky de Beer : 27/05/2010)

Monday, August 31, 2009

Some pics in history

8 days old in dad's arms
17 days old and my eyes are open,
43 days old and sleeping on my stomach.

Friday, August 28, 2009


Ever wonder about the abbreviation A.S.A.P.?

Generally we think of it in terms of even more hurry and stress in our lives. Maybe if we think of this abbreviation in a different manner, we will begin to find a new way to deal with those rough days along the way.

There's work to do, deadlines to meet;
You've got no time to spare,
But as you hurry and scurry-

In the midst of family chaos,
"Quality time" is rare.
Do your best; let God do the rest-

It may seem like your worries
Are more than you can bear.
Slow down and take a breather-

God knows how stressful life is;
He wants to ease our cares,
And He'll respond to all your needs

It's been a tough week for Sam...he's battling a terrible cold which he just can't seem to overcome and then on top of THAT, he's throat seemed to be bothering him like crazy the last couple of days so took him to the doc today..and he has severe thrush in the back of his throat. It seems like after every hurdle he makes it over, there's another two waiting in the wings and when he's managed to get through more challenging issues like breathing and feeding, it's awfully frustrating that things seemingly less "threatening" like a cold or thrush can cause him so much discomfort and misery. So, today we apply A.S.A.P. (thanks Diane) and say a prayer for Sam's health, as well as for his precious two friends...Matthew, who is also terribly ill with tonsillitis and Jodie, also battling a cold. We pray that these three little angels get well soon.

Wednesday, August 26, 2009

Conquests to date....

Sam has faced many challenges in the first twelve weeks of his life...and all of them are things we take for granted. First - he could not breathe on his own and required seven weeks on first an oscillator, then a cpap machine, then nasal cannular and finally normal oxygen. While he was struggling to learn to breathe we kept thinking and praying "Oh...if only he could learn to breathe". Then, Sam conquerored breathing - Yeah! But then Sam could not drink - he was breathing on his own but could not leave the hospital because he could not feed. So after two weeks (and nine weeks in NICU) Sam left the hospital with a feeding tube and we kept thinking and praying "Oh...if only he could learn to drink". Then, Sam conquerored drinking - Yeah! But, Sam was diagnosed with sever reflux and so was put on meds and an anti-reflux formula which made him severely constipated, so much so that he could not have a bowel movement without a suppository. And it was awful - it affected his drinking, after two days without a bowel movement he would cry bitterley with discomfort and we kept thinking and praying "Oh...if only he could poo" LOL And then, Sam conquerored pooing - Double Yeah!!! And then, we were told to expect delays with Sam's milestones because of a) his being so prem and b)the RTS. So when Sam smiled, really really smiled, it was Triple Yeah!!

Oh how we have learnt to appreciate each and every conquest and to be truly thankful....every time Sam finishes a bottle, every time he has a dirty nappy (yes, even when it's at 4am), every time he smiles is just as precious and glorious as the first time!

A sign?

On Friday, 1st May 2009, I picked up a book I had bought several weeks before by Dick Dobson. The very first story was about a thirteen year old boy, very healthy and athletic and excelling in tennis, who is diagnosed with muscular dystrophy. His dad is devastated, but the boy becomes the comforter and the one reassuring his dad with comments like "I don't need legs to serve God". The story goes on to explain how this particular boy's mission for God transcends any physical limitations he could face in a lifetime....the boy's name was Samuel. I went ice cold - were we been prepared for something?

One week later I was admitted, Samuel was still not growing and my doctor felt that keeping him in a womb that was not supplying enough oxygen and blood could be fatal. A week after that our Samuel was born.....and he was so beautiful and so small and so beautiful and so fragile...and oh, so very very beautiful. When we were told he has Rubinstein-Taybi Syndrome it was almost too difficult to believe because he was so perfect, except for his little unique thumbs and toes. But both Chris and I knew instantly that, no matter what the diagnosis, to us he is perfect and a gift from God. The Lord has entrusted him to us and I can only believe that our little Samuel has a precious purpose here on Earth and it is going to be an exciting and inspiring journey finding out bit by bit exactly what the Lord has planned for us. This tiny being is meant for something wonderful, something great and just as Hannah entrusted her Samuel to the Lord, so we place our Samuel tenderley in the Lord's hands.

A step back...where it all began

In about September 2008 Chris and I started "playing" with the idea of having a baby. After months of throwing the idea back and forth, we decided in October that I would go off the pill for three months giving my body enough time to work it out of my system and would use alternate "methods" until the end of the year. Then, if we were 100% sure, we would "try" from January to March - we gave the Lord a three month "window" :-) and decided that if it was God's will, I would fall pregnant within that time and if not, we would just carry on as normal. On the 5th October 2008 I officially stopped taking my pill.

At the end of October we decided to take a trip to Stilbaai for the weekend to visit Chris' folks and within half an hour I started feeling car sick. The nauseau continued throughout the weekend and after a sudden craving for the taste of beer (which I usually detest) we became a little suspicious. Two weeks later one Sunday morning (15 November) we lay in bed and, after yet another bout of nauseau, I looked at Chris and said "You know that I am pregnant!"

Of course, what were we thinking, giving the Lord 2pm after taking two pregnancy tests (uhhhmmm....we had an oopsie with the first one - it had been a while) the test came back positive...little Samuel had taken just over two weeks to enter our lives...and our hearts. Well, even before finally deciding to stop my contraception, I had told Chris that I wanted my baby boy to be called Samuel. It is such a precious name..meaning "God hears" and well, what more solid evidence could we now have than that. It was sooooo exciting talking about our plans and going "window" shopping for baby items, but somehow I knew that there was something going on. When I go through my journal, almost right from the very start I realise how frantically I prayed that my baby would be "normal", almost pleading with God. On the 15th April 2009, at my 27 week scan, my gynae confirmed that Samuel was not growing. Because his growth was so below average, he suspected that Samuel had dwarfism, but confirmed inuterine growth retardation at the very least. We made an appointment with a fetal specialist and would wait until my next scan, at 31 weeks.

Thursday, August 20, 2009

Some good news

Samuel went to the doctor today........

He has picked up 120g this week even with 2 days of not drinking well and it seems like his reflux is under control. When you are worried and stressed even the tiny snippets of good news, like this, is sometimes enough to give you renewed hope and strength to keep going. The picture of Sam was taken on the 18th August 2009 and, no, it's not Barney that's so big......

Wednesday, August 19, 2009

The journey started

It turned out that not a lot was conquered, so far, Samuel is growing, a bit at a time and trying very hard. We battled to get him to eat/dring properly, and it turned out the little man has severe reflux. Run out buy AR formula, and it works well for two weeks, until we change the formula to another brand, note to self.......... patience and more patience, dont make any sudden changes unless its life or death.

I will continue to do whatever I can to help Sam grow. I'm proud of him and even more proud of my wife Nicky, and Love her more than ever, and admire her for spending the bulk of her day, while I'm at work with Samuel.
From a Proud and Loving Father and Husband